Rotating part of my medical team every year takes an emotional toll

As much as I try to shove this feeling aside, there’s a part of me that quietly dreads this time of year. Amid the beach days, hot weather, and all the other joys this season brings, I simultaneously face a significant challenge: The medical team at my hospital is changing. While this sort of shift may not affect most patients, living with spinal muscular atrophy (SMA), as I do, makes matters a bit trickier when it comes to new doctors.

I have to admit that I’ve been quite spoiled. Being blessed with an amazing team of doctors across various specialties for at least two decades, I’ve grown accustomed to their care. I trust them. Together, we’ve navigated through some harrowing times and have emerged stronger. I know with utmost confidence that these are the people who know me the best.

However, change is also inevitable. And every July, the interventional radiology department at my hospital rotates its fellows as part of a training program. The residents come from around the country to gain specialized knowledge in a specific field, and I’m their patient.

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The first time I had to say goodbye to a doctor in the fellowship, I bawled my eyes out. He changed my perspective on so many of my ailments and always made me laugh in tough situations. Because of him, I looked forward to going to the hospital for once. Alas, right when I felt as though I’d built a solid connection with him, it was his time to leave.

Having to say goodbye meant more than just losing our personal connection, and the same goes for anyone on my care team. With a diagnosis as complex as SMA type 1, the comfort and peace of mind that come with having a doctor who understands the nuances of this disease are half the battle in facing my health issues.

After all, living with SMA means living with a disease that affects almost every aspect of my body. Because of my weakened muscles, my breathing is compromised. I have trouble swallowing and severe scoliosis. I deal with chronic fatigue and pain. I also have to manage gastrointestinal issues, vertigo, respiratory infections, and more. Nevertheless, and despite my medical records showing that I am, in fact, a pretty complicated case, I’m also still a human being who wants to be understood.

For a new doctor to gain a comprehensive overview of my health, every detail matters. And sometimes, every detail takes months to understand fully. So in an attempt to make the transition as seamless as possible, I make a point to reassure them that they’re doing a great job. I build trust and camaraderie. I make sure they see me taking charge of my health so they understand that not only am I a strong advocate for myself, but that we can work together as a team.

Even so, the transition can feel daunting at times. The emotional energy it takes to begin again, year after year, is exhausting. It’s an added stressor to the long list of health complications I have to manage. But I do so with perseverance and strength, knowing that this fight for my health is not for the faint of heart. Though it’s not easy to have to reintroduce myself, there’s hope in knowing that, every July, there will be one less doctor in the world who’s unfamiliar with SMA.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.